Tuesday, July 10, 2007

Why we decided to change pedia...

I am not sorry to say goodbye to the kids' long time pediatrician -- after all, MC's only with him for 5 years and 3 years for IC. Oh, we enjoyed a very good relation with the staff of the clinic and even the pedia himself, but I guess, when it concerns our kids, we tend to have higher expectations.

The pedia came to our attention via the midwife who assisted during my post-natal period. My husband was impressed because when he made the appointment for the first check-up; he was instructed to come early to avoid the crowd and the sick.

We came early and was asked to enter one of the vacant examination rooms. They also made sure that all kids visiting bring their own blankets to be placed on the examination tables. The nurses are cordial enough and the clinic is clean despite it being full with toys and books. As the kids grow older, they got surprise sweets after a check-up and small toys to choose from when they got shots or after undergoing blood tests. They are being taken cared of, spoiled even.

They are indeed at home there. The only problem I have in this clinic is that the parking spaces are almost always full, and if one do get a vacant space, you have only very narrow spaces to maneuver your car. Oh, well, we could take the bus; or usually, someone drives us there.

You might ask why we've decided to change our pedias then? Because of one weekday morning last December 2006. We thought that MC was only nursing a bad cold, after having celebrated her 5th birthday party the night before. We let her sleep late, but when she wont even stand up to eat -- we became worried. She mostly slept the whole day, too weak to do anything else. The next day, the papa decided to bring her to the doctor.

She was subjected to a battery of blood tests, simply because, the doctors cannot find what was wrong with her. The cold was not really that bad and she's got no fever -- but she's very weak. We were told to call late that afternoon for the blood tests result; which came as abnormal. We didnt panic because most of her blood tests are irregular. And the doctor said they must wait for the next morning for the whole test result.

The next day, the clinic called; we must bring MC to the doctor that morning. That was around 9 am. I decided to ask my bro in law to drive us to the doctor; since I would also need someone to stay with IC in the waiting room. We got there around 10:30 am, and had to wait for more than two hours for the doctor to examine MC.

When he finally came, the first thing he told us was that MC must be confined to the hospital because the blood test results were very alarming. Oh yeah, if it was so alarming, why did we wait for at least two hours to be informed?

But I did I not panic; I was too angry to panic. I stayed calm outside but inside, I was really boiling. While the doctor was preparing the paperworks for the hospital, I called my husband. He called the clinic and talked to the doctor. I am glad about that too, or else I would end up shouting the house down. After that nightmare of a visit, we drove home; my husband also took time off from work.

I wanted to go with them to the hospital, but IC was really crying and dont want to be left with oma and opa. She even begged to be left alone in the car, if that was all it would take for her not to be left behind. MC doesnt want to see her sister crying hysterically, so she agreed for me to be left alone with IC. Thus, my eldest daughter left with papa in the car, direction -- the hospital -- that almost broke my heart but I know I also have my little daughter to think of. My husband, who was already in tears, was also torn; I know he needed me to be there but...

I was really praying so hard that everything would be ok. My husband tried to get on the phone with me as much as possible, but he's got nothing to say as they also had to wait for a long time. MC had to undergo another battery of tests, including more blood tests. Can you imagine the needle pricks on her small arms? I am glad that she was brought to the University Clinic in Heidelberg; they have the best facilities and medicine professionals there.

The doctors in Heidelberg wanted to keep her in the hospital for observation; but my husband doesnt want that. He had to sign a waiver form; the hospital doesnt want to be blamed if something happened. They arrived home at almost 8 pm. A lot of people who learned of what happened have been calling at home, and I am sorry to be hearing myself saying 'I dont really have no idea.'

It turned out that she has indeed hereditary spherocytosis. We already half expected that MC has that condition. Hereditary spherocytosis has almost a hundred percent chance of being passed from generation to generation. Papa and his sister; one of his nieces, the oma and one of oma's cousin -- they all afflicted with this condition. We cannot trace further because earlier, they still havent given a name to this ailment.

Anyway, MC was in and out of Heidelberg that month. Blood tests, x-rays; she's a real trooper. You would be amazed with the resistance of my child. We never let her be confined though, we always thought that the home is the best place for her. After all, with the ailment running in the family; we have more experience on how to deal with it. She needed loads of fluid; she got to drink at least 2 liters per day. We gave her boxes of of her favorite drinks to encourage her. And of course, she's kept within our warm embrace.

Most importantly, we changed the kids' pedia. That's one of our best decisions for our children.

Note: MC would have to be checked every three months; and IC would be joining her in Heidelberg on her next visit for blood tests -- I hope and pray that she'd be spared though.

4 comments:

Hiya - my prayers with you. I have Hereditary spherocytosis and my Mum has it and my sister (the other 4 siblings dont). Its actually a 50% chance of being passed on as its autosomonal dominant. I'm really surprised that they didnt test your babies at birth with the strong family history. I had my spleen taken out when I was 5 and have done fine since. My Mum and Sister were the same. We just get the flu shot and pneumo shot and rest of body takes over for the spleen. My sister two wee kids both have it. Nowdays they try to avoid the spleen removal if they can and have the kids on large large doses of folic acid which seems to help (same as pregnant ladies :_0 I'm pregnant right now 33 weeks and we know that our baby has to be checked for HS at birth. I agree with you re your doctor - he should have just had you go to the hsopital instead of dragging you all there. HS is a pain to have but thankfully not the worse of the genetic disorders but having a good doc is crucial. My sister and also American Ped haemtologist recommended following guidelines from British Journal of Blood medhttps://www.bloodmed.com/contentimage/guidelines/2121.pdf

hi, thanks for visiting -- dont you know i have never knew anyone outside of the family who actually have HS? in some parts of europe, they are not even aware that such a condition exists! they discouraged us to test the kids when they were babies because they said that the result would not be 100% -- they said it is better to wait until they are 3-5 years old. my husband, his sister and my 86 year old mom in law have also their spleen removed. i didnt know about folic acid, i might ask our doctor about that. i'll check the guidelines - am really glad for your comments. thanks for the prayers, you'll be in our prayers, too.

Same thing I was wondering..didn't they test her at birth? Here kasi the ob-gyne will ask you outright if you have certain genetic conditions that could be passed on to your kids. That way, appropriate tests can be done even prior to birth. And then there is also Newborn screening which is done immediately after the child is born.

hi scrooch -- actually they made a pre natal and newborn screening tests too but since HS can be confused with anemia or jaundice; that was what happened. with HS, they just need to be careful with abt two types of illnesses; otherwise ok naman, her lola here with HS is already 86 years old and still fit.